A week or so ago, Karen posted the following on my wall:

Hi,

I have been reading your page for the past few months and have wanted to message you to ask a few questions. If you read my page you would see that I have a daughter who is turning five in three weeks and she has alopecia. She is now in the shedding phase and what will happen....who knows...

I have come to terms with the fact that she may have to live with this for the rest of her life and now I am pretty much OK. I still have my days but on the most part, I am content.

What I am concern is the school matters and what would it be like for her when I am not around. I feel like you would be the perfect person to ask since you have grown up with this condition and have bloomed into a beautiful woman.

Was it hard for you? How did you deal with the issues (especially the teen years)? What about wigs? Were you bullied? Did your parents talk to the school about your condition? Did you go to a private or public school? Was it easy for you to make friends? I guess you would now what I am leaning towards. I really want to know firsthand what it may be like so that I can help her steer her life through it.

Any guidance from you will be worth more than money.


Karen

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What follows is my response. I felt it was too long to put on her page as a comment, and also that others may be interested in reading, so here it is instead. I realise it is very long, but I was unsure how to cut it down. Thanks for taking the time to read it...


Dear Karen,

It sounds like you are coming to terms with the role Alopecia may play in your daughters life - which is great for you :) And excellent for her, because without a doubt - you are going to be her biggest supporter, especially in her younger years.

I'm glad my postings (however sparse at times) have helped with this progress and given you confidence that there are women out there, all over the world, who have lived this life and not let it stop them.

In regards to growing up with this condition, my story is a little different. I was lucky enough to never be bullied (that I remember) - and I think that part of this is because my twin sister was my 'constant friend' throughout primary school. Her friends were my friends, we were in the same class, and she was very protective of me.

When starting primary school, I went to a co-ed catholic school, and as we belonged to the same parish, most of the parents and teachers already knew about my alopecia. This environment, or that existence of my sister, may also have had something to do with how little I was bullied at that age.

Before I started highschool, My parents talked to the teachers at the school - but I do not believe that this was ever explained to any of the other students, except by myself. On the first day of highschool - we did the whole introduction thing - and when I introduced myself, I clearly explained that I had alopecia areata, and what it was. This was a huge moment for me - but - in the later stages - this was the point where was from then able to explain alopecia to anyone.

The highschool I went to was an all girls catholic school. Whilst I think that going to this school, and the girls I was with, made a difference to my escaping relatively scar free (emotionally) from high school, - it was also hard - because I was surrounded everyday by girls talking about their hair, playing with hair etc.

I think this answers most of your questions, which just leaves me to give my own experiences and my interpretations of how they have shaped me.

I've always found it easy to make friends - that is my personality though. I think it's had alot to do with the emotional support my family gave me throughout the years. The never ending flow of encouragement, love, acceptance - all of which helped me grow into a confident and open minded individual.

My sisters and parents were - I believe - all in their own way, distraught by watching the youngest of their family lose all of her hair. I of course have no real way of knowing what they went through - but from what they have told me, in the younger years - it was much harder for them to watch, than for me to really know what was going on.

In later years, from conversations, I have gathered that it wasn't easy. My parents spent the first 13 years of my life trying every cure that they could find. Every lotion, diet, and natural cure they heard about. From certain teas to drink in the morning, to a chiropractor that made me cry every time I went - the hardest (and I'm fairly certain the last) treatment my parents tried. It hurt them more than me, to watch what I went through with that man.

Nothing helped. I don't remember ever being that disappointed by it - though I'm sure I was, but it my parents got tired I think, of the disappointment, and I got tired of trying - so at about 13 years we stopped.

As a child, I found it hard to deal in ways - I hid behind a tomboy facade, as I didn't' feel girly or attractive. I didn't want to get a wig - because I thought it was a form of hiding. I thought no boy would ever like me - though this never stopped me liking them.

These attitudes were not good for me, and I think it would be beneficial to discourage them as much as you can. I don't know how. For me - being a tomboy didn't fade till I was surrounded by girls my own age at school, and realised how much i actually had in common with them. The wig ideal was not good for me either - i still hid - behind a hat instead; I only recently realised that its not hiding, its just a choice to change your look however you want. And no boy ever liking me was finally put to rest by my first boyfriend, a darling boy who I'm still friends with.

The most important thing my family ever did was they never stopped making sure I knew they loved me. They told me every day of my life they did. My sisters and my parents all told me I was beautiful constantly. And on top of that - I surrounded myself with friends who understood, who I could talk to, and who - without evening talking about it - supported me in every way they could.

So those are the most important things. Support your daughter, encourage the rest of your family to do the same. Ensure she knows you love her, and that she is beautiful - no matter how her alopecia goes. Be open with her about it, talk to her if she needs to. When its in your reach - educate those around her - ignorance leads to fear. When its not - teach her to educate those around her.

I hope these words have helped, and if you want to know more - let me know.

A while ago my best friend wrote an article about my experiences with alopecia, and having a twin sister. The article is here: http://www.news.com.au/couriermail/story/0,20797,19056513-3102,00.html

Take care, and I hope this has helped (it's a bit rambling - but so many thoughts in my head not in the greatest order)

*hugs*
-Dom